Sunday, April 9, 2017

We do not think much about
writing a blogpost and, as you can see, we have not written at all in a very
long time.

For many years, the blog
was a way to process our experiences with Loki, his major health issues and the
wonderful progress we witnessed. Also, writing was a way to inform our family
and friends across the globe about Loki's health and development. We wanted
Loki to have his story chronicled so he will always know how powerful and
persevering he is. Finally, we wanted to share our story in order to
provide courage and hope for others who have similar experiences. Due to
Facebook, where we can keep people informed, due to the decreasing need to
process our challenges, and due to a much, much healthier and thriving
boy, we do not write anymore.

Yet, we do want to share
some major developments from the past few years.

Loki is 8,5 years old, and
on a daily basis we look at him and wonder how he came this far? How did this
incredibly tiny preemie, with lingering, severe health issues, become such a
big and thriving boy?

Fall 2014 Loki's health was
good enough to enrol in a regular school setting. We chose the local Waldorf
school. Within a few weeks, we had a completely different boy at home. Whereas
his medical needs greatly decreased during his special-ed years, his
social-emotional well-being stalled. Loki feels safe when others truly see and
understand him. This was not the case his last year in special-ed (his first year there was great). He showed significant
behavioural issues, anxiety to be left at school, with screaming and crying.
When he started at his new school, we saw a new boy. His extremely experienced
teachers new exactly how to make Loki feel safe and seen. Even writing this
now, years later, fills me with both profound sadness as well as a deep sense
of gratitude for his “new” school.

Still, Loki is doing very
well in school. He has an amazing teacher who no doubt has a great impact on
how well Loki develops. Although we certainly see some signs of attention
deficit, which is a common lingering issue associated with extreme premature
birth, academically he is doing just fine. Loki is a curious, inventive, strong-willed,
energetic, sweet, sensitive and smart boy. But most of all he is generally a
very happy child who skip-hops through his day. What else can we wish for?

With regards to his medical
needs, during the Winter of 2015 Loki took a huge step. After not using the
feeding tube for six months, Loki took out his own “tubey” at the hospital. He
was able to drink enough to keep his one kidney healthy, and with several
dietary supplements, he was able to gain weight. Loki was both proud and sad.
He only remembered himself as a boy with a feeding tube. We also spoke with
gratitude about his “tubey” because it saved his life. Ceremonially we decorated
a little treasure box and wrote notes to thank Loki’s tubey for helping him
life. His wonderful Dr. Draaisma at UMC Radboud was patient and attentive as
ever when Loki, induced with anxiety, was afraid to actually pull his tubey
out.

In the years following this
major, glorious event, Loki keeps getting healthier. Yes, his kidney still
shows hydronephrosis, and yes this will need to be monitored the rest of his
life with most likely some major treatment at some point in time. But the proteinuria
is no longer detected in his urine and the urine concentration disorder has
been stable for several years. He needs to drink plenty, but no longer the large amounts from the past.
And although he still does not like this, he can and will do it with reminders
and a set schedule. His pulmonary health also shows significant improvement.
Where he would catch a pneumonia each time he had a cold, he no longer needs lung
medicine during the summer months. Moreover, last fall (2016), Loki had an
airway infection which he overcame without antibiotic treatment. This is
incredibly good news, as he has had a large amount of antibiotics throughout
his life, compromising his sensitivity to some of them.

However, the most recent
development with his gastric emptying issues happened just yesterday. As blog
readers will remember, Loki suffered from extreme delayed gastric emptying for
many years. The combination of this with his kidney issues was rather
unfortunate. When Loki received motilium, a medicine to resolve nausea and
stimulate the emptying, we entered a new, much more bearable zone.Slowly, slowly, we moved from throwing up
many times a day and feeding tiny bits of homemade tube feeding all day long,
to where we are now. And where we are now, we never dared to hope for.

In Fall 2016, Loki seemed
to gain weight sufficiently. His dietary food was, one at a time, taken off the
schedule. His doctor decided to stop it altogether and see what happened. And
Loki did and does well. He still needs a few extra small meals to ensure plenty
calorie intake, but he does it all with regular food! In addition, increasingly
we look at him and wonder how he finished his plate without us asking to take a
bite, and another and another. And then yesterday (April 7th, 2017)
something huge happened: Loki took his last 1 millilitre of motilium.
Completely against all odds and expectations, after trying many times before,
we were able to phase out that medicine. Somehow, at the age of 8,5, his
stomach decided to start doing what it never was able to do: empty without the
support of medicine. This moment is the inspiration to write a post. We want to
share how in awe we are with this amazing boy.

How hopeful and exciting
that even after 8 years, our lives increasingly show signs of normalcy with
regards to Loki’s health!

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.